How do Child-life Specialists Help Children Cope with Illness and Death?

In this first part of a two part interview, SevenPonds speaks with Kelsey Mora, a certified child-life specialist (CCLS) at Advocate Health in Chicago and chair of their system-wide pediatric and perinatal bereavement support group. Her work as a CCLS  provides in-person support for children and adolescents facing acute and chronic medical challenges of their own or that of a family member. 

Editor’s note: This interview has been edited for length and readability.

Kelsey Mora CCLS

Laura B. Hayden: Good morning Kelsey. I understand you work with a very special clientele — children and teens who are facing medical crises. Can you explain what you do as a child-life specialist that is different from a doctor or nurse?

Kelsey Mora: My sole purpose as a child-life specialist is to provide comfort and coping skills for a child going through a stressful medical experience. How can I make their situation better? As a certified child-life specialist, I use therapeutic play to support children and their families in health care settings. My elevator speech is: We use play to decrease stress and increase coping; we teach children about their diagnosis and procedures, and we celebrate big and small moments in the hospital.

Laura: Is this non-medical role new in pediatric care?

Kelsey: Well, 40 years ago there were one or two child-life specialists here at Advocate Children’s Hospital. Now we have 14. And these days you’ll find child-life specialists in other settings, like pediatric outpatient clinics, schools, camps, dentists’ offices, funeral homes and courtrooms. CCLSs work with children who have witnessed a traumatic event whether it involved the children themselves or their parent, sibling, close relative or friend.

Laura: That sounds like challenging work. What led you to this field?

Kelsey: When I was a teenager  I spent a lot of time with my friend who died of leukemia. I saw what went on in the hospital and bedside.

Laura: I’m sorry. I can understand how that pointed you in the direction for this work. What is a typical day on the job like for you?

Kelsey: I never really know what to expect. I could be bringing a high-profile athlete room to room to visit the patients and then move on to helping a child who is scared about a procedure or spend time talking with a child whose sibling is dying.

One “typical” Thursday awhile ago, I started out knowing that my patients who are having a “good day” would be healthy enough to participate in pet therapy and a bedside magic show. We may even have had a birthday to celebrate or an end-of-chemo party. What I didn’t know that morning was that there was a horrible car accident the night before resulting in the death of a child’s mother and brother and leaving behind a grieving father. The child had been put on life support in the Pediatric Intensive Care Unit (PICU) and had become my newest patient.

Laura: Phew! That’s a tough agenda. It sounds like you have to be ready for anything — celebration and tragedy. How do you maintain your own steadiness and composure through unforeseen circumstances and trauma?

Therapeutic play helps to normalize a child’s hospital stay.

Kelsey: My colleagues and I work as a team that supports one another. Together we decide how we can make the situation better for the children. We focus on what the child needs to cope.

On the particular Thursday that I mentioned earlier, I started by gathering updates from our incredible team including the nurses, physicians, chaplain, social worker and my emergency department child-life colleague. That was when the real work began. I gathered donated items to normalize the young girl’s hospital environment. It might have been a pink fleece blanket to brighten her hospital bed or a doll dressed in a patient gown to give her a companion she could relate to.

I next approached her father. I began by explaining my role. At that point, he set aside his own grief (as most parents in this situation do) and asked: “How will I tell my daughter?” We spoke about developmentally appropriate language to use and ways to create positive memories of his son and wife. Next, I provided him with grief resources. I printed photos of his family to place in his daughter’s bed and on the walls to personalize her hospital room.

When she was taken off of the ventilator later in the afternoon and placed on oxygen, I approached her carefully and cautiously, got down on her level and introduced myself. I said, “My name is Kelsey, and I am here to make you as comfortable as possible in the hospital and to help your worries go away.” I provided reassurance and explained the many tubes and medical equipment on her body. As necessary, I provided distractions, including movies and activities to look forward to or techniques to help her stay calm during a difficult procedure. Most of all, I provided her with a safe space and hospital confidante — following her lead, assessing the right time to share the most difficult news alongside her father, whose heart was broken.

Go to part two of our interview with Kelsey. We will be talking about how children deal with illness, grief, and their own mortality, and what you can do to help them along.